Friday, October 5, 2012

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.


I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

3 comments:

  1. Jess, I actually was sick right before my latest surgery as well. I had a sore throat and didn't feel 100% the day before. I think it was from all of the stress (you think?) and traveling out of state for a brain surgery. I am wishing you all the best and feel for you in so many ways. It has almost been a year since my latest surgery; I can't believe that time goes so quickly. The days are very long in recovering from brain surgery, but the months and years fly by. Hang in there. I'm praying for you. Take care! Jessica

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  2. "I'm a contradiction of survival and vanity." I love this sentence! I totally believe that there is deep beauty in the juxtaposition of concepts - especially when they apply to ourselves. Celebrate both parts of you...I know your readers do!

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  3. "So Cal" PattiOctober 7, 2012 at 10:34 AM

    Sending love and prayers your way for nothing but good news in LA! I still feel that the Dopa PET Scan will bring you that miracle that you are looking for! You'll be so close to me down here and will be on my mind everyday! Wishing you safe travels and happy results! Keep us posted! Love, Patti

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